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Susan: New lessons learned on celiac disease

February 8, 2020 By Dr. William Davis

Susan shared her Wheat Belly/Undoctored success story previously, a story of impressive changes in health and weight loss despite the fumbling of numerous doctors over the years. But Susan’s experience also highlights just how meticulous she had to be with wheat/grain/gluten avoidance, given her eventual celiac diagnosis:

“Just finished chapter 6 in the new Updated and Expanded Wheat Belly book. I take my time so I absorb everything. Chapter 6 addresses celiac disease which I have.

“It used to be that I would get contaminated from getting tiny bits of gluten in food or getting exposed to flours when people were baking near me, or eating nuts processed on shared equipment with wheat products, or in meds, shampoos, cosmetics, lip balm, you name it. I can’t go in cereal or bread aisles without coughing. I avoid them.

“When I used to get exposed, it brought on the most excruciating gut pain you can imagine. I wanted to die. I would get diahrrea, arthritic joint pain, fatigue, and would feel bad for at least two weeks. I had to finally say ‘No More’!!

“So I started making all the food I eat, got new pans and baking utensils. New cutting boards. No kissing my partner if he’d eaten wheat. (He’s now been grain-free for several years). No kissing my elderly parents except on their forehead. No kissing my grandchildren. Washing my hands vigorously if I touched someone’s hands after they ate wheat products. Not setting my glass of water on a table near crackers, etc. or where someone standing there eating a cracker could drop crumbs into my glass. I don’t take meds, but when I did I would have the pharmacist question the manufacturer. I do the same for shots. And to ease my friends’ minds when they invite me for dinner I tell them I’ll bring my food (and now my partner’s food also) and tell them we’re really easy to have as guests. Many times I bring part or all of the food to share.

“So thank you, Dr. Davis, for writing chapter 6 which is very thorough. It will educate people about the dangers people with celiac have to deal with. I used to be laughed at and considered crazy.

“Part of my family is now eating the same way I do which is great. But I still only eat what I make and on my own dishes and with my own utensils. Cheers!”

Susan learn that meticulous avoidance was necessary to regain control over her health. Not everyone has to be as meticulous as Susan. But, if you, too, are experiencing residual issues despite wheat/grain elimination, you should also ask whether you are among the people who are also exquisitely sensitive to grain residues.

What is truly sobering about Susan’s experience is just how little it takes from a wheat/grain exposure—kissing someone?!—to provoke a reaction. It is a reminder of just how toxic grains can be for some people in such seemingly minor quantities.

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Filed Under: DIY Healthcare, Health Information Tagged With: celiac, celiac disease, diy health, diy healthcare, diyhealth, diyhealthcare, dr william davis, undoctored, wheat belly

About Dr. William Davis

William Davis, MD, FACC is cardiologist and author of the #1 New York Times bestselling Wheat Belly series of books. He is also author of the new Undoctored: Why Health Care Has Failed You and How You Can Become Smarter Than Your Doctor.

Reader Interactions

Comments

  1. Stuart

    February 16, 2020

    The quantity isn’t important because celiacs have an allergic reaction to gluten no matter how small the amount. I’m not celiac but I am gluten-sensitive. My doctor told me that my anti-gliadin antibodies while not as high as a celiac were still 3 times normal levels. Stopped eating wheat, GI issues went away. After accidentally ingesting wheat (it’s in absolutely everything!) I know because the GI issues start again and I start scratching my forearms – classic sign of an allergic reaction. So I believe that allergic reactions are part of non-celiac gluten sensitivity too.

    A group in Sheffield UK led by Dr Marios Hadjivassiliou has identified that there are forms of Celiac Disease that involve neurological disease without necessarily involving the classic GI symptoms. These principally involve ataxia (degeneration of the part of the brain controlling balance) and neuropathy, but also loss of cognition and dementia. Dr H speaking here to a Celiac conference
    https://www.coeliac.org.uk/research/our-approach/research-conference/research-conference-2017-the-gluten-free-diet-classic-coeliac/gluten-and-the-brain-professor-marios-hadjivassiliou/?preview=true

    Dr H shows brain scans taken 2 years apart of a patient who refused to go on a Gluten Free diet and the atrophy of the patient’s cerebellum is very evident. He also points out that the changes in the brain can look identical to vascular dementia. (However, given that celiacs have twice the risk of heart disease than non-celiacs I suspect it might actually BE vascular dementia) The problem is that CD patients without gastro symptoms are getting diagnosed 10 years later than the classic CD patients (if at all) precisely because neither the doctors nor the patients are making the link between the neurological symptoms and gluten. Dr H’s recommendation is that all patients presenting with neurological symptoms be screened for gluten sensitivity.

    My takeaway from this is that you shouldn’t wait until the gluten has caused such irreparable damage to your brain that you’re showing neurological symptoms. Eliminate gluten NOW to save your brain.

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